In the year my mother was diagnosed with Alzheimer’s disease, I was living in a city an hour away from my parents, working six days a week, commuting through traffic for an hour each morning and evening, and spending my one day off doing laundry. I wanted to help my father with my mother. An Alzheimer’s sufferer is a tremendous burden on his or her primary caregiver, and statistics show that in fact the spouse who takes on the role of primary caregiver often dies first. I also wanted to be with my mother. She was slipping away. Alzheimer’s victims don’t follow a straight line decline. They go through peaks and valleys like on a roller coaster. Some days they have moments of clarity. Other times they’re lost in the woods. But they do decline, and I was missing those increasingly rare moments when my mother surfaced. I was losing her and I was stuck in a cubicle.
The Tragedy of Alzheimer’s Disease
I was incredibly saddened and frustrated. My mother had cared for me, loved me, been there for me and I couldn’t be there for her. My father had never let me down, and I felt I was letting him down. It occurred to me one long dark night that this was life: You can’t ever pay back what your parents give you. You pay it forward. Someday I would have children of my own. Until then I’d do what all Americans did: watch my mother (and, I reasoned, eventually my father) drift away from a distance, unable to help or even properly say goodbye.
My own father’s mother had suffered a stroke that rendered her bedridden for the last ten years of her life. She spent that decade flat on her back in a nursing home in Michigan. We lived in Maine, and once a year we’d load into the family station wagon and head West, spending an hour by her side. When we filed into the room every year, she at first looked at us blankly. We were strangers and her stroke had robbed her of the ability to move and talk. But always after twenty minutes would come a flash of recognition in her sweet eyes. Then her lips would pull back and tears would spill down her cheeks, and the cheeks of my father.
Remembering those visits, I realized with a shock that my father hadn’t fared any better than me. I decided it’s true that we as Americans are metaphorically about the same as Eskimos in fables, putting our elderly on ice floes and watching them float into the distance.
Journaling for Change
As the months went by I realized I couldn’t accept the status quo. Couldn’t just shrug my shoulders and give in to watching my mother leave from far away. But there was little more I could do.
I made the one tiny change I could make. I started leaving for work an hour early. That extra hour got me ahead of the traffic rush, which cut my morning commute down to ten minutes instead of an hour. That put me at work two hours early. At least I wasn’t spending the time stuck in traffic. What I did with the extra two hours changed my life.
I journaled in a paper notebook, sitting in my car every morning and watching the sun rise over Casco Bay. I wrote about how angry I was that my mother was dying, that I couldn’t be there to help my father or spend time with her, and all because of a job that barely let me pay my bills. Unfortunately for me, my parents lived in a little town in Central Maine, where jobs were as rare as Alzheimer’s cures, so I couldn’t just quit and move closer.
Still I kept coming in early to work, and still I kept writing my troubles. At first there were no solutions: just anger. But eventually I hit on an idea. I’d spent some summers shooting rafting videos for a whitewater company in Northern Maine. I had some rudimentary video production skills. Why couldn’t I shoot wedding videos? If I did that I could work Saturdays and edit video from home. In that case, home could be wherever I wanted. I could get an apartment near my parents and see them and help them whenever I liked.
New Ideas, New Beginnings
I stopped journaling and started using my two morning hours in the car to call video production companies in New England and ask them for work. The answers I got were all the same: “I’m just a one-man operation and the economy is terrible. I can’t hire anyone.”
Finally at about the fortieth phone call the guy on the other end of the line gave me the idea that would solve my problem.
“Why don’t you hang out a shingle online and start your own video business,” he said. “Undercut everyone’s prices. You’ll get work. That’s what I did.”
I spent some time creating a rudimentary website – little more than a business card on the internet. That summer I quit my job and booked three weddings for $800 each. Barely enough to buy the camera I’d need to use to shoot the videos. On the side, I kept working for the company I’d just quit on a contract basis. I worked from home, and moved close to my parents. Between the weddings and the contract work I was making almost as much as I had in my cubicle. The best part was, I was able to have dinner with my parents three or four nights a week, and spend an entire day each week with my mom.
A Break From Alzheimer’s
My one day a week gave my father a much needed break. It also generated a lifetime’s worth of good memories. Alzheimer’s disease mercifully leaves the sense of humor intact until almost the last. One day my mom looked at me and said, “I think you’re a very nice man. Do we know your family? Are you Irish?” to my mom, a red-headed, full-blooded Celt and proud of it, being Irish was everything.
“Half,” I said.
“Oh? What’s the other half?”
“Oh, God help you.”
Another day, gently observing the frequency and duration of my many visits, she said of me, “I think that young man is very nice. It’s a shame he doesn’t have a family.” We would go out to lunch or go for walks downtown, and she’d point out odd looking people and say, in her stage whisper that could be barely heard from a quarter mile away, “Look at that one. She looks like a real hot number,” or “How’d you like to meet him a dark alley?”
That winter, I paid $2,000 for a booth at a wedding show, booked twelve weddings, and pulled in $4,800 in retainers. After that my business was off and running. It grew quickly from weddings to corporate videos, taking me all over the country and eventually letting me work no more than twenty hours a week, largely from home, making more than I ever had in my life.
Time and Relatives
Several years after my mother passed away, my father had a stroke that rendered him bedridden. This time, with free time and resources to spare, I was able to spend hours and days in his hospital room. I was able to help rehabilitate him. Within a few months he was released from the hospital and I’d taught him to drive again. He drove from Maine to Florida that winter, stopping along the way to visit old friends and was able to fly out to Arizona to spend time with his brother.
He had ten more strokes that year, and they eventually claimed his life. But during that time we shared countless laughs, and the man who had always been my father and hero became my close friend. Toward the end I was able to set up my laptop and work from his nursing home room, taking breaks to massage his cramped legs and advocating for his health with the doctors and nurses.
Now, looking back on it all, I realize I owe a lot to those mornings I drove to work early and watched the sun rise. I’ve since sold the video production business and moved to West Virginia and got married, but I’ve never returned to the cubicle job. These days, still working from home, I take breaks to play with my three month old son. This morning as I write this, I’m watching him learn to grip toys and roll on his side. It’s a sight I wouldn’t trade for the world.